Stigma and the HIV Continuum of Care J. Dennis Fortenberry MD MS
description
Transcript of Stigma and the HIV Continuum of Care J. Dennis Fortenberry MD MS
Stigma and the HIV Continuum of Care
J. Dennis Fortenberry MD MS
J. Dennis Fortenberry MD MSIndiana University School of Medicine
I have no conflicts of interest relevant to this presentation.No medications or treatment will be discussed in this presentation.
Background
• Continuum of care as a lifespan chronic illness model– Definition of wellness in context during chronic disease– Trajectories of wellness / illness balance– Transmission potential separates HIV from other chronic
conditions
• Stigma influences HIV health at multiple points over the lifespan– Disclosure to others– Responsibility for transmission prevention– Responsibility to be a “good” HIV patient
Stages of Continuum of Care in HIV testing & treatment
24%
Gardner et al. Clin Infect Dis. 2011; 52 (6): 793-800.
75%
50%
67%
Linkage to Care and Engagement in Careoverall and by site
Site Eligible Referrals [%] Linked to Care (%) Engaged in Care (%) Linked & Engaged, %
Overall 1679 [100] 1172 (69.8) 1043 (89.0) 62.1A 65 (3.9) 34 (52.3) 26 (76.5) 40.0
B 160 (9.5) 95 (59.4) 67 (70.5) 41.9
C 70 [4.2] 51 (72.9) 47 (92.2) 67.1
D 105 (6.3) 61 (58.1) 59 (96.7) 56.2
E 147 (8.8) 95 (64.6) 84 (88.4) 57.1
F 105 (6.3) 70 (66.7) 61 (87.1) 58.1
G 103 [6.1] 63 (61.2) 61 (96.8) 59.2
H 60 (3.6) 44 (73.3) 36 (81.8) 60.0
I 90 (5.4) 60 (66.7) 55 (91.7) 61.2
J 102 [6.1] 83 (81.4) 70 (84.3) 68.6
K 169 (10.1) 126 (74.6) 118 (93.7) 69.9
L 288 (17.2) 208 (72.2) 202 (97.1) 70.1
M 124 (7.4) 102 (82.3) 90 (88.2) 72.6
N 82 (4.9) 73 (89.0) 60 (82.2) 73.2
O 9 [0.5] 7 (77.8) 7 (100.0) 77.8
Philbin et al, AIDS & Behavior, in press
Why does stigma matter in the HIV continuum of care?
• Prevention
• Testing
• Linkage to care
• Retention in care
No Transmission Risk
Infection
Risk behaviorsPrevention behaviorsPrEP(Vaccines)
HIV test Results
Reduced Trans-
mission Risk
Less Transmission Risk Least Transmission Risk
Linkage to CareLTC
PreventionServices Testing services
Engagement in CareEIC
Retention in CareRIC
Reduced Transmission Risk?
Adult Care
LTC services Case management and retention services Transition services
Greatest Transmission Risk
AppointmentAdherence
ARTInitiation &Adherence
Secondary PreventionAdherence
AdultHealth Care
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Prevention Networks
Testing Networks Youth Care Networks Adult Care
Networks
Years Months to Years Days Months Years Lifelong
Care Milestones
Timeline
Targets
Services
Public Health System Health Care System
Systems
Care Delivery Networks
Macro-level – Public Health and Health Care Infrastructure
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Micro-level – Providers/Clients/Clinics
HIV test Undetectable Viral Load
What is stigma?• Internalized HIV stigma
– endorsing negative feelings and beliefs associated with HIV and applying them to the self
• Anticipated HIV stigma – expectations of discrimination, stereotyping, and/or prejudice
from others in the future due to one’s HIV
• Enacted HIV stigma – experiences of discrimination, stereotyping, or prejudice from
others in the past or present due to one’s HIV
Earnshaw et al. AIDS Behav (2013)
Different stigma mechanisms have different health outcomes
Internalized HIV Stigma
Anticipated HIV Stigma
Enacted HIV Stigma
AffectiveHelplessnessAcceptancePerceived Benefits
BehavioralAdherence to ARTAdherence to medical visits
PhysicalCD4 / Viral loadChronic illness function
Earnshaw et al. AIDS Behav (2013)
Psychosocial model of stigma activation
Labeling
Status Loss
Stereotyping
Isolation
Enacted Stigma
Anticipated Stigma
Internalized Stigma
Structural Discrimination
Self Discrimination
Individual Discrimination
Social power
Cultural power
Legal power
Public health power
Structural relationships Marginalization Stigma processes Stigma outcomes
No Transmission Risk
Infection
Risk behaviorsPrevention behaviorsPrEP(Vaccines)
HIV test Results
Reduced Trans-
mission Risk
Less Transmission Risk Least Transmission Risk
Linkage to CareLTC
PreventionServices Testing services
Engagement in CareEIC
Retention in CareRIC
Reduced Transmission Risk?
Adult Care
LTC services Case management and retention services Transition services
Greatest Transmission Risk
AppointmentAdherence
ARTInitiation &Adherence
Secondary PreventionAdherenceDisclosure
AdultHealth Care
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Prevention Networks
Testing Networks Youth Care Networks Adult Care
Networks
Years Months to Years Days Months Years Lifelong
Care Milestones
Timeline
Targets
Services
Public Health System Health Care System
Systems
Care Delivery Networks
Macro-level – Public Health and Health Care Infrastructure
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Micro-level – Providers/Clients/Clinics
HIV test Undetectable Viral Load
Internalized Stigma
Internalized stigma and HIV testing
• Fear of results
• Lack of perceived risk
• Reluctance to disclose
Nelson et al. J Urban Health, 2010
No Transmission Risk
Infection
Risk behaviorsPrevention behaviorsPrEP(Vaccines)
HIV test Results
Reduced Trans-
mission Risk
Less Transmission Risk Least Transmission Risk
Linkage to CareLTC
PreventionServices Testing services
Engagement in CareEIC
Retention in CareRIC
Reduced Transmission Risk?
Adult Care
LTC services Case management and retention services Transition services
Greatest Transmission Risk
AppointmentAdherence
ARTInitiation &Adherence
Secondary PreventionAdherenceDisclosure
AdultHealth Care
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Prevention Networks
Testing Networks Youth Care Networks Adult Care
Networks
Years Months to Years Days Months Years Lifelong
Care Milestones
Timeline
Targets
Services
Public Health System Health Care System
Systems
Care Delivery Networks
Macro-level – Public Health and Health Care Infrastructure
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Micro-level – Providers/Clients/Clinics
HIV test Undetectable Viral Load
Internalized Stigma
Institutional and Structural Discrimination in HIV Testing
• Social geography of test sites– Government complex– Site associated with HIV/STD
• Space (physical and virtual)– Hidden / difficult access of test site– Difficult information access
• Organizational behavior– Inflexible testing schedules– Risk assessment by phone
• Staff behavior– Silence or apathy about testing concerns– Breach of confidentiality– Judgments about risk
Meyerson et al AIDS Patient Care STDS (2014)
Institutional and Structural Discrimination, by stage of testing experience
Institutional Structural
First EncounterSocial GeographyPhysical / Virtual SpaceOrganizational BehaviorStaff Behavior
Entry / Reception
Staff Behavior
Social GeographyOrganizational BehaviorStaff Behavior
Testing ExperiencesStaff Behavior Staff Behavior
HIV Continuum of Care, Stigma, and MicroaggressionsTranslation of daily experience into stigma
• Microaggressions – verbal, behavioral or structural expression of hostility, derogation or negative attitudes
– Microassaults – explicit derogation through name calling, avoidance, or overt discrimination
– Microinsults – brief and apparently inconsequential demeaning of identity or behavior
– Microinvalidations – unintentional exclusions, negations, or nullification based on identity or behavior
Nadal (2013) That’s So Gay: Microaggressions and the Lesbian, Gay, Bisexual, and Transgender Community
7 ways microagressions affect stigma in the HIV care continuum
• Assumption that sexual identity explains HIV testing, treatment and prevention behaviors
• Avoidance of issues related to sexual identity
• Over-identification with sexual minority clients
• Interactions based on stereotyped assumptions
• Expressions of heteronormative bias
• Assumption of need for counseling
• Assumption of risk innate to sexual identity
Nadal (2013) That’s So Gay: Microaggressions and the Lesbian, Gay, Bisexual, and Transgender Community
No Transmission Risk
Infection
Risk behaviorsPrevention behaviorsPrEP(Vaccines)
HIV test Results
Reduced Trans-
mission Risk
Less Transmission Risk Least Transmission Risk
Linkage to CareLTC
PreventionServices Testing services
Engagement in CareEIC
Retention in CareRIC
Reduced Transmission Risk?
Adult Care
LTC services Case management and retention services Transition services
Greatest Transmission Risk
AppointmentAdherence
ARTInitiation &Adherence
Secondary PreventionAdherenceDisclosure
AdultHealth Care
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Prevention Networks
Testing Networks Youth Care Networks Adult Care
Networks
Years Months to Years Days Months Years Lifelong
Care Milestones
Timeline
Targets
Services
Public Health System Health Care System
Systems
Care Delivery Networks
Macro-level – Public Health and Health Care Infrastructure
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Micro-level – Providers/Clients/Clinics
HIV test Undetectable Viral Load
Internalized Stigma
HIV Linkage to CareStigma management and complex practice
Community Membership
Formal Relationships of Testing and LTC
Providers
Integration of Diagnosis and LTC
Crisis Management
Suicidality
Social Support
Housing
Patient Orientation
Stigma Management
EducationWritten & verbal
Motivation
Readiness for Care
Case Management
Barriers
Communication with other professionals
Partner NotificationServices
Developmental & Cultural
CompetenceInformation Systems
TrackingTransitionContinuity
Linkage Practices
Linkage SystemsLinkage Providers
Fortenberry et al., J Adolesc Health 2012
No Transmission Risk
Infection
Risk behaviorsPrevention behaviorsPrEP(Vaccines)
HIV test Results
Reduced Trans-
mission Risk
Less Transmission Risk Least Transmission Risk
Linkage to CareLTC
PreventionServices Testing services
Engagement in CareEIC
Retention in CareRIC
Reduced Transmission Risk?
Adult Care
LTC services Case management and retention services Transition services
Greatest Transmission Risk
AppointmentAdherence
ARTInitiation &Adherence
Secondary PreventionAdherenceDisclosure
AdultHealth Care
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Prevention Networks
Testing Networks Youth Care Networks Adult Care
Networks
Years Months to Years Days Months Years Lifelong
Care Milestones
Timeline
Targets
Services
Public Health System Health Care System
Systems
Care Delivery Networks
Macro-level – Public Health and Health Care Infrastructure
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Micro-level – Providers/Clients/Clinics
HIV test Undetectable Viral Load
Internalized Stigma
Changes in internalized stigma as a function of ART
Tsai et al. AIDS Behav (2013)
Mixed effects model for Clinic/Provider Predictors of Engagement in Care
Estimate Odds Ratio (95% CI)
Data Sharing / Outreach worker function
Data Sharing / Direct patient contact
Data Sharing / No direct patient contact
No data sharing / Direct patient contact
Ref
-2.64 (0.002)
-0.78 (0.12)
-
0.07 (0.05, 0.09)
0.46 (0.36, 0.58)
Outreach worker effectiveness
Higher
Lower
Ref
-0.9 (0.15)
-
0.41 (0.30, 0.55)
Philben et al. AIDS Care (in press)
No Transmission Risk
Infection
Risk behaviorsPrevention behaviorsPrEP(Vaccines)
HIV test Results
Reduced Trans-
mission Risk
Less Transmission Risk Least Transmission Risk
Linkage to CareLTC
PreventionServices Testing services
Engagement in CareEIC
Retention in CareRIC
Reduced Transmission Risk?
Adult Care
LTC services Case management and retention services Transition services
Greatest Transmission Risk
AppointmentAdherence
ARTInitiation &Adherence
Secondary PreventionAdherenceDisclosure
AdultHealth Care
Multi-Dimensional Continuum of Care for HIV Prevention, Diagnosis & Treatment
Prevention Networks
Testing Networks Youth Care Networks Adult Care
Networks
Years Months to Years Days Months Years Lifelong
Care Milestones
Timeline
Targets
Services
Public Health System Health Care System
Systems
Care Delivery Networks
Macro-level – Public Health and Health Care Infrastructure
Meso-level – Testing, Referral, Treatment and Community Mobilization Networks
Micro-level – Providers/Clients/Clinics
HIV test Undetectable Viral Load
Internalized Stigma
Community Mobilization and Structural Change
- Coalition with common vision/mission- Focus on population and geographic area at risk- Root cause analysis and strategic planning - Engagement of diverse community members- Documentation and tracking progress- Technical assistance and capacity building - Maintaining coalition health and function
- Subcommittee focused on barriers to LTC/EIC/RIC- LHD strategically engaged in focus on youth LTC- Toolkit and training materials
Community Mobilization Intervention
LTC Committee
& engagement
of LHD
Structural ChangesMental health services
Substance use treatment
Integrated HIV/STI SVCYouth-appropriate
social venuesYouth-friendly
prevention
LTC Structural ChangesSimplified eligibility
Patient navigator Integrated treatment
servicesStructural stigma
Improved LTC, EIC and RIC
Reduced HIV
Incidence
Intermediate Outcomes Ultimate OutcomesIntervention Core Risk Factors
HIV Acquisition – risk networksNumber of sex partners
High-risk vs low-risk partnersPartner concurrencyInternalized Stigma
HIV Transmission – Linkage to care Stigma
DisclosureEligibility
Access
Community Coalitions
LTC Focus
Willard et al. J Prevention Intervention in the Community, 2012
Care Milestone
StructuralLevel
Material Resources
Technology Informal Social Influence
Formal Social Control
Social Connectedness
Settings
HIV Test Completion (TC)
Micro Costs of testing
PrEP Partner support Partner Notification
Social support for testing
Hours of operation
Meso Costs of testing
Opt-out testing
Social Marketing Mandated testing
Community testing coalitions
Health fairs
Macro HIV testing financing
Home testing systems
Standards for testing facilities
HIV Test Results Receipt (TRR)
Micro Short TC/TRR interval
Alternative results delivery
Friend/family involvement
Disclosure to others
Meso Co-location of TRR/LTC
Information technology
Mandated reporting
Integration of LTC/testing
Macro Information systems
Standards for HIV testing
Linkage to Care (LTC)
Micro Housing
Information sharing
Disclosure to others
Crisis management
Patient navigators Location of services
Meso Rapid approval for services
Policy for rapid test confirmation
Stigma Public Health Authority
Networks of testing/ care services
Mental health services
Macro Eligibility criteria
Early ART Stigma Standards for ART initiation
Housing
Engagement in Care (EIC)
Micro Housing security
Adherence support
Disclosure to others
Maintenance of social support
Youth-friendly services
Meso Transportation Distance medicine
Disenrollment or loss of benefits
Adherence support
Social support groups
Macro Eligibility criteria
Retention in Care (RIC)
Micro Effective treatments
Relationships w/ providers/staff
Interference in activities
Meso Disenrollment or Loss of benefits
SchoolingEmployment
Reproductive health services
Macro Eligibility criteria
Anti-discriminationPolicies/laws
Transition from Youth to Adult Care
Micro Treatment of side-effects
Meso Transfer of information
Adherence support
Transition service Transition - skilled providers
Macro Continuity of benefits
Disclosure to others
Confidentiality Partner health care benefits
Standards for transition care
Stigma and the HIV Continuum of CareSummary
• Multiple effects of stigma across the HIV continuum of care
• Likely ongoing effects through the life span
• Evidence of efficacy at multiple intervention levels
• Nobody said this was going to be easy